The Trend Continues . . . Family Caregivers Are Getting Increased Attention Across the Nation

In our last issue, we mentioned what seems to be a "Tipping Point" for family caregiver issues across the states. This edition of Policy Digest is longer than usual given all the legislative actions in the states . . . so it seems to confirm the trend. There are actions galore as states tackle planning for older adults and family caregivers, specialized training for professionals in dementia care, involving family caregivers in hospital discharge planning, and employment discrimination against family caregivers in the workplace.

New studies, reports and projects are on deck exploring issues from caregivers of veterans, using technologies in the home to improve dementia care, to end-of-life issues and many other topics. There are a number of early summer conferences including Innovation HealthJam, the first 3-day on-line virtual conference from June 17-19 combining the worlds of technology and healthcare; (I am happy to be a participant on the "Technology and Older Adults: The New Era of Connected Aging" forum).

And while we don't ordinarily share information on apps, what is not to like about an app called Casserole Club? Casserole Club, operational in the UK, links people online who are willing to prepare and share a meal with a neighbor less able to cook for themselves. There are currently more than 4,000 volunteer cooks.

So while we ask your pardon for the length of this issue let's see it as a good thing: clearly much attention is being paid to policies and programs that support family caregivers!

Enjoy!

Kathleen Kelly, Executive Director

Family Caregiver Alliance, National Center on Caregiving

(San Francisco, CA)

State Legislation, Policy & Reports

Articles of interest on pending and proposed legislation as well as current policies and new reports surrounding caregiving and healthcare at the state level.

Bill signed by the governor on May 12, 2014. An Act relating to designated caregivers; providing definitions; permitting hospital patients to designate certain caregivers; requiring patient consent; requiring certain notation in medical records; permitting modifications to caregiver designations; prohibiting certain construction; requiring certain notices to caregivers; requiring hospital to consult with caregiver to prepare for aftercare and to issue discharge plan; providing for circumstances in which hospital is unable to contact caregiver; prohibiting use of state or federal funds for payment of caregivers; prohibiting impact on state or federal funds; providing for codification; and effective November 1, 2014.

Signed into law by Governor May 11, 2014. Amends the Women's Economic Security Act (WESA) to include familial status and family caregiver status as part of protected classes in employment actions. Persons cannot be denied employment or terminated, discriminated against for promotion or pay by an employer or employment agency.

CT: Funding And Support For Home-and-Community-Based Care For Elderly Persons And Persons With Alzheimer's Disease

The Commission on Aging shall study (1) private sources of funding available to elderly persons and persons with Alzheimer's disease in need of home or community-based care, (2) the availability of programs funded by the state that provide home- or community- based care to elderly persons and persons with Alzheimer's disease in need of home or community-based care, and (3) the cost effectiveness of such programs funded by the state. Not later than January 1, 2015, the commission shall submit a report to the joint standing committee of the General Assembly of its findings.

Strengthens Iowa's elder abuse prevention, detection, and intervention efforts. Elder abuse defined as non-accidental infliction of bodily injury; sexual offenses; financial abuse; neglect of food, shelter, clothing, supervision and physical or mental health by a Caregiver. Implementation will be through local Agencies on Aging who shall designate an elder rights specialist to administer the local program and conduct public education and outreach on elder abuse. Establishes a Victim's Compensation Fund.

There are few Alzheimer's and dementia care training requirements for health care professionals and facilities serving individuals with Alzheimer's disease or dementia in Connecticut. It is estimated that sixty-eight percent of nursing home residents in Connecticut have some form of dementia. Yet, Connecticut only requires Alzheimer's special care units or programs to provide dementia-specific training to their staff. This bill expands the training requirements and ensures the consistency with which not only institutional care facilities educate their employees on Alzheimer's care, but also includes training on dementia for missing persons police training and Emergency Medical Technicians.

The State Department of Public Health shall maintain a Health Care Worker Registry that will note when any direct care provider has a claim of abuse, neglect or financial exploitation filed against them. Access to the Registry shall be limited to the Department on Aging, the Department of Healthcare and Family Services, the Department of Human Services, and the Department of Public Health and providers of direct care. These agencies are responsible for doing an on-line verification that no direct care provider has such complaints against them, and the results of the verification must be retained in records. These State agencies and providers are prohibited from retaining, hiring, compensating directly or on behalf of a patient, or utilizing services of providers for whom the online check of the person reveals a verified claim of abuse, neglect or exploitation. No payment of government funds will be allowed for persons with such claims against them.

Creates the Illinois Family Care Provider Act. Provides that an employer must provide up to 12 weeks of unpaid family medical leave to an employee during any 12-month period for one or more of these purposes: the birth or adoption of a grandchild in order for the employee to care for such grandchild; the placement of a grandchild with the employee for adoption or foster care; or in order to care for a grandchild if such grandchild has a serious health condition or the employee to care for a grandparent if such grandparent has a serious health condition. Contains provisions concerning notification and certification. Authorizes an employee to file a civil action for enforcement.

The California Department of Aging is charged with analyzing data and population trends when developing new programs and policies. This bill would require the department, upon receiving $200,000 in private funds earmarked for implementing this bill, to form an expert panel of at least 13 members to make recommendations to the legislature on how to improve services for unpaid and family caregivers in California. The bill requires the committee to provide a written report of the findings by July 1, 2016.

The state of Delaware recognizes that older adults who need assistance want to remain in their homes, and that currently much of their care is being performed by unpaid caregivers at a cost savings to Delaware of $1.5 billion each year. With future projections indicating a growing number of older adults requiring care a Family Caregiver Task Force of at least 21 specified members will be formed to study and make findings of what supports are necessary for family caregivers assisting the aging and adults with disabilities. The Task Force shall report its findings to the General Assembly by May 21, 2015.

Alzheimer's Disease; Requiring the Division of Emergency Management, in coordination with local emergency management agencies, to maintain a registry of persons with special needs; providing additional staffing requirements for special needs shelters; authorizing the Department of Health, in coordination with the division, to adopt rules relating to standards for the special needs registration program; establishing the Ed and Ethel Moore Alzheimer's Disease Research Program within the department, etc. Effective Date: 7/1/2014

The Commissioner on Aging and the Commissioner of Social Services shall conduct a study of state services to the aging population. The study will include demographic changes of the state's population that will be 65 years of age or older for each year through 2034, an inventory of state and federally funded programs for person aged 65 or greater as well as an assessment of the need for such programs, and an analysis of gaps in services. By January 2015 a report of the results shall be submitted to joint committees of the legislature.

Requires the Secretary of State establish an electronic registry for advance directives that specify patient's directives for healthcare if they are not able to communicate. The registry would be established by January 2016. California driver's licenses would be changed to allow space for a blue dot which would signify the licensee has filed an advanced directive with the registry. The CMA and California Chapter of College of Emergency Physicians support the bill, no opposition noted. Currently in committee.

This bill requires CA Health and Human Services Agency to establish a registry for POLST forms by the purpose of collecting POLST forms signed and submitted by health care providers and disseminating the information in the form to authorized users. The POLST is a legal medical form containing end of life orders and signed by a healthcare provider. The registry would be established by January 2016. Patients would be given the right to opt out of the registry. Currently 6 states have POLST registries, with varying levels of success. Currently in committee.

This second annual update of the National Plan details progress made last year in the fight against Alzheimer' disease and priorities in the coming year. Last year 11 Alzheimer's risk genes were identified providing new insights about disease pathways and possible drug targets, more than 23,000 health care professionals received dementia training, states received funding the develop long-term services and support for people with dementia, and inappropriate use of antipsychotic drugs among nursing home patients with dementia was reduced by 14 percent. The Plan also identifies the following action steps led by HHS to better research, treat, and prevent Alzheimer's disease: accelerate research that will identify the earliest stages of Alzheimer's disease and develop targets to stop disease progression: increase Alzheimer's collaboration between scientists, caregivers and health care providers; assist healthcare professionals address ethical issues in dementia care, such as balancing privacy, autonomy and patient safety; and increase global collaboration on dementia by hosting a February 2015 follow-up meeting to the December 2013 G8 Dementia Summit.

Recent media attention has focused on the fact that by 2017 the number of elderly will exceed the number of family caregivers in the UK, and the amount of abuse in care homes. New ways of supporting family and friends who are caring for the elderly must be found. Informal caregiving often falls to one family member who often is isolated and stressed in their caregiving role. A new computer application called Casserole Club is helping to increase informal care and support. It links people online who are willing to prepare and share a meal with a neighbor less able to cook for themselves. There are currently more than 4,000 volunteer cooks. Especially for elderly without children, these networks can be vital. Additional applications are being developed to create new ways to expand the support network.

A recently report based 2012 General Social Survey found that nearly half of all Canadians aged 15 or older have provided care to a family member or friend with disability, aging, or a health condition. Age related problems produce the greatest need for caregiving, followed by cardio-vascular disease, mental health and Alzheimer's/dementia. Among spouses providing caregiver cancer was the most common need for caregiving followed by mental health problems and a sick child. Adult caregivers are 2.5 times more likely to care for a mother than a father, and 4 times more likely to care for their own parents than in-laws. Parents are the most common recipients of care. Woman comprised 54% of caregivers, and averaged more weekly caregiving hours than men. Many other analysis are included.

China has recently expanded health insurance coverage, but still faces numerous healthcare problems. Factors such as a rapid rage of aging, migration from rural to urban living, lower nutritional value of food and decreased physical activity have put a strain on China's system of care. The result is an expanding burden of chronic disease and disability, even as mortality due to acute illness decreases. At the same time the country faces a serious nursing shortage, and an overreliance on hospital care for primary care problems. China has the opportunity to design a new healthcare system. This report recommends a non-Western model of care and details population health management principles that can be applied not only to manage the health needs of Chinese residents, but could be exported for use in other countries.

Medical researchers at UCSF and UNMC received a $10 million grant to implement an innovative clinical program that combines the UCSF system of high quality dementia care with the University of Nebraska's Medical Center expertise in rural dementia care and functional monitoring. This new system emphasizes continuous and personal care, supporting family caregivers, keeping patients healthy and preparing for advanced illness. This model aims to improve satisfaction with care, prevent emergency-related health care costs, and keep patients in the home longer. Smartphones and sensors are used to rapidly detect and respond to changes in functional status, which is particularly important for patients living remotely, alone, or who are at-risk for acute declines.

This report notes that spouses who are caregivers are called upon to perform a range of medical/nursing tasks usually performed only by licensed professionals, but that they are the family members that provide a majority of the care (65% of spouses performed such tasks vs. 42% of non-spousal caregivers). Despite shouldering a majority of these responsibilities, spouses were less likely to receive professional in-home support services. Non-spousal caregivers are almost 3 times as likely to receive help from others, such as friends and family, compared to spousal caregivers. Various reasons for the differences are proposed such as financial limitations, fear of losing independence, lack of awareness of resources, and personal preference. Additional research may help tailor interventions that assist but do not supplant the bond between spouses.

Little is known about the role of military caregivers, and differences between caregiving for the elderly or chronically ill. Currently there are approximately 5.5 million military caregivers in the U.S.; of these 4.4 million are caring for pre-9/11 veterans and their experiences are more similar to caregivers of civilians. The 1.1 caregivers of post-9/11 veterans tend to be younger, and more often caring for persons with mental health and substance abuse issues. Military caregivers consistently experience worse health outcomes, greater strains in family relationships, and more workplace problems than non-caregivers, and post-9/11 military caregivers fare worst in these areas. Caregiving cost is analyzed, and recommendations are made to improve the lives of caregivers of veterans.

New research from the Indiana University Center for Aging Research claims that the rates of dementia in those with schizophrenia in the study were double the rate of participants without schizophrenia. As the diagnosis and treatment of schizophrenia has improved more persons with schizophrenia are living longer, leading to higher rates of dementia, congestive heart failure and lung problems in patients over the age of 70, compared to those the same age without schizophrenia. The study was conducted by examining the medical records of more than 31,000 adults of average age 70, from a large urban public health system from 1999 to 2008. Dementia was noted in 64% of participants with schizophrenia vs. 32% of others. Conversely, 30% of persons with schizophrenia were diagnosed with a cancer compared to 43 percent of other patients.

JAMA: Stability of End-of-Life Preferences : A Systematic Review of the Evidence

Researchers evaluated 59 peer-reviewed longitudinal study findings that evaluated the stability of End of Life (EOL) preferences over time, and with changes in health status to see if patient choices for EOL care are unchanged by time and alteration in health status. EOL preferences were reflected in advance directives and by advance care planning. Approximately 70% of patient preference for EOL care was unchanged overtime, with the greatest stability found among inpatients and seriously ill outpatients. Patients with higher education levels also had fewer changes in EOL preferences. Researchers noted considerable variability among studies, and recommend further research be conducted to attain more reliable results.

Applied Econ and Health Policy: Spillover Effects on Health of Family Members of the Chronically Ill

Researchers from Harvard and the University of Michigan surveyed 1,267 people over the age of 18 and 102 individuals between the ages of 13-18 who had a parent, spouse or child living in their household with a chronic condition, to examine the level of spillover effect (spillover effect refers to the tendency of one person's emotion to affect how other people around them feel). Chronic conditions were defined as arthritis, depression, Alzheimer's disease/dementia, or cancer. Regression analysis controlling for caregiving responsibility and health status of an ill family member showed results vary by relationship and type of illness. Greatest spillover was found in parents of a child with cancer, a parent with arthritis, or parent or child with depression.

UCLA Study: 1 in 3 California Hospital Patients over 35 Has Diabetes Editor's Note: Why are we featuring this study? Because Diabetes is a known risk factor for developing dementia.

Between 1980 and 2010 the number of Americans with Diabetes tripled. California is not exempt from this trend. Analysis of the Office of Statewide Health Planning and Development (OSHPD) patient discharge data and annual financial data from public use files for 2011, as well as data from California Health Interview Survey from 2011-2012 provided data for the study. In 2011 there were 2.4 million hospitalizations in California with 31% or roughly 729,000 hospitalizations, among Californians ages 35 and over with a diabetes diagnosis. Demographic and ethnic variants are noted. Taking into consideration that diabetes was often not the primary reason for the hospitalization, the average cost of a hospital visit for a patient with diabetes was still significantly higher than for a patient without diabetes ($18,691 vs. $16,492). The growing number of people with diabetes is a primary driver of increase healthcare costs.

Nearly one in five Medicare patients are victims of medical injuries that often aren't related to their underlying disease or condition, but are due to medication errors, receiving a treatment that causes complications of an existing medical problem, or an allergic reaction to a medication. These injuries are avoidable, and are usually caused by medical mismanagement. A majority (66%) occur in outpatient settings such as clinic, doctor's offices, emergency rooms and nursing homes. These have not been well researched for medical errors. The study followed 12,500 Medicare patients who filed claims between 1998 and 2006 whose average age was 76. Men, older people and those from low-income families are at higher risk, as were people who were disabled or had a chronic illness. Those who experienced a medical injury due to mismanagement were twice as likely to die as persons who had no mismanagement. Researchers noted that avoiding chronic conditions by living a healthy lifestyle is the major way people can lessen chances of medical errors.

The first Innovation Healthjam is a 3 day on-line virtual conference from June 17-19 combining the worlds of technology and healthcare. The event is led by Panasonic's Business Development and Innovation Group, and co-hosts include the AMA, Center for Technology and Aging, Center for Information Technology Research in the Interest of Society, Intel, UC Davis and UC San Francisco. Discussion forms include: Patient Engagement and Healthcare Design for Consumers, Technology and Older Adults: The New Era of Connected Aging, A Mobile Health Agenda for Transforming Healthcare Delivery, Compute for Personalized Medicine: Finding the Cause and Cure through Genomics, Telehealth and Telemedicine: Emerging Opportunities in Addressing the Triple Aim (Linking Patients, Caregivers and Providers), Your Physician of the Future, Health Innovation for Vulnerable Populations - Worldwide, Remote Patient Monitoring (RPM).

PCORI: Power of Partnership in Research: Regional Meeting in Minneapolis

We're inviting patients, caregivers, healthcare leaders, and other stakeholders in the Midwest and Upper Plains states to join us at our fourth regional engagement workshop, which will take place in Minneapolis, Minn., Thursday, June 19. This event offers an opportunity for individuals from Iowa, Minnesota, Montana, Nebraska, North Dakota, South Dakota, Wisconsin, and Wyoming to learn about PCORI, guide us on how to conduct patient-centered clinical comparative effectiveness research, and join us in building a patient-centered research community. View the agenda and register at the link below.

Hartford Foundation Webinar: Joining with Advocates On Behalf of Low Income Older Patients

If you're interested in or currently working on issues related to Medicare and Medicaid beneficiaries----"dual eligibles"----you'll want to join us for this special webinar on June 17, 2014 at 1:00 p.m. EDT. This interactive session will focus on how geriatrics professionals can connect with consumer groups and amplify their advocacy on behalf of low income older patients, particularly dual eligible Medicare/Medicaid beneficiaries. Community Catalyst's Voices for Better Health project is partnering with state and local advocates in Michigan, New York, Ohio, Rhode Island and Washington, equipping them with the resources and expertise necessary to establish a voice for dual eligibles in the policy debate in their states and at the federal level. The webinar will feature Gregg Warshaw, MD, University of Cincinnati Health and Aging Policy Fellow and Former President of the American Geriatrics Society.

Family Caregiver Alliance presents a webinar on the benefits that are available to those taking care of a veteran. The purpose of this webinar will be to introduce caregivers and clinicians to the VA Caregiver Program, and provide an overview of Caregiver Support Services offered through the U.S. Department of Veteran Affairs.

The SCAN Foundation's 2014 Annual Long-Term Services and Supports Summit will be held on Tuesday, September 30, 2014 at The Sacramento Convention Center. Learn about new policy for seniors and persons with disabilities, hear national and state policy leaders speak, and network with health providers, caregivers and other professionals.

ACL Grant: Evidence-Based Fall Prevention The Administration for Community Living is offering 10 public grants of $400,000 each, and 5 tribal grants for $100,000 each to study "Evidence-Based Falls Prevention Programs Financed Solely by 2014 Prevention and Public Health Funds." Applications must be submitted electronically by July 8, 2014.

HHS Grant: Transforming State LTSS Access Programs and Functions into a No Wrong Door System for All Populations and All Payers

Thirty-five grants are available to states and territories through HHS to improve Long-term Services & Supports (LTSS). The grants title is "Transforming State LTSS Access Programs and Functions into a No Wrong Door System for All Populations and Payers." Applications must be submitted electronically and have a final filing date of July 15, 2014.